{"id":466554,"date":"2026-02-10T20:37:09","date_gmt":"2026-02-10T20:37:09","guid":{"rendered":"https:\/\/www.newsbeep.com\/ca\/466554\/"},"modified":"2026-02-10T20:37:09","modified_gmt":"2026-02-10T20:37:09","slug":"inside-new-eddie-vedder-netflix-documentary-a-matter-of-time","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/ca\/466554\/","title":{"rendered":"Inside New Eddie Vedder Netflix Documentary, ‘A Matter of Time’"},"content":{"rendered":"

\n\tCelebrity charity efforts, however well-intentioned, don\u2019t usually get anywhere close to solving problems for real. But Eddie and Jill Vedder<\/a>\u2018s EB Research Partnership, in its 15th year of a sprint to cure a rare, devastating genetic skin disorder, is making actual progress towards its goal. When the Vedders launched their charity in 2010, there were zero treatments for epidermolysis bullosa, and just two clinical trials underway. Now, there are three FDA-approved therapies, which means new hope for parents and kids facing unimaginable suffering. \u201cWe\u2019ve celebrated the progress, but the cure is what we\u2019re after,\u201d Eddie says, in a Zoom with Rolling Stone. \u201cThis is, scientifically, a solvable problem.\u201d<\/p>\n

\n\tAs chronicled in an award-winning new documentary about the Vedders\u2019 quest, Matter of Time, which just hit Netflix, more than 40 clinical trials are currently underway for EB, and the Vedders\u2019 charity has raised more than $80 million so far, funding 180 research projects. The film (directed by Matt Finlin, with a score by Broken Social Scene<\/a>) is built around concert footage from Eddie\u2019s 2023 solo shows at Seattle\u2019s Benaroya Hall, with EB patients and their parents in attendance. The film also follows the daily struggles of families living with EB \u2014 hours of bandage-changing, bleach baths, constant anxiety. But at the center of the narrative is the pure, heart-shattering humanity of kids with the disease, who just want to play with their friends, hug their parents, and be able to look towards a future. \u201c\u200aIt feels good to have this in the world,\u201d Eddie says of the film. \u200a\u201dI think people can take a lot from it. Not just in regards to this community, but it\u2019s just more information to know about our fellow man.\u201d\u00a0<\/p>\n

\n\tThe Vedders learned about EB when Mikey Fullmer, a nephew of Jill\u2019s childhood best friend, was diagnosed. \u201cHe was so fragile,\u201d says Jill. \u201cI had young kids that age, and it\u2019s devastating. To think that if you squeeze them too hard, you would hurt them. Playing outside with them, it\u2019s dangerous. You could really hurt them. There\u2019s so many things that can go wrong. I just started to meet all sorts of families, and the bravery of the kids, and these parents \u2014 every day is a struggle. Just watching your child in pain, this kind of severe pain that we can\u2019t even compare anything to, it\u2019s heartbreaking. I wanted to help.\u201d<\/p>\n

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\n\t\u201cWe got a quick education,\u201d says Eddie, \u201cand we were meeting people in the community early on, which was really what got us. Their spirit was contagious. These kids have so much courage. None of us welcomes pain or hardship. But you could say that pain and hardship is where wisdom grows. These kids are wise beyond their years. And it has this subconscious effect of imparting on you all the things that we take for granted \u2014 how blessed we are to not have to face these kinds of difficulties on a daily basis, and wanting to do what you can to effect positive change for them.\u201d<\/p>\n

\n\tEB patients born with the most severe forms of the disease lack Type VII collagen, the protein that keeps skin layers together, which means even minor friction causes hard-to-heal wounds. The disease attacks internal organs, too, from the esophagus to the intestines, and patients who survive into adulthood face a high chance of developing aggressive skin cancer.\u00a0 \u201cIt\u2019s quite a painful and in some ways diabolical condition,\u201d says Eddie. \u201cEspecially when you consider that it affects not just the skin. It used to be called the most diabolical disease that no one\u2019s ever heard of \u2014\u00a0that\u2019s not the case now. That\u2019s already one accomplishment that the EB community has met.\u201d<\/p>\n

\n\tThe Vedders didn\u2019t originally intend to get involved as deeply as they did. \u201cBecause of Ed, people pay attention,\u201d Jill says. \u201cSmall donations came in. We had little events. Then it just got to the point where the more money you can raise, and these scientists think they really can cure this \u2014 we just wanted to throw as much at them as we could. And I believe them. It\u2019s happening.\u201d<\/p>\n

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\n\tEddie compares it to his work on behalf of the West Memphis Three<\/a>, who were convicted of murder on dubious evidence in the Nineties, and only released after many years of advocacy in 2011. \u200a\u201dWhen we got involved with the West Memphis Three, we figured we could raise some money and we could sort it out in a year or two, and it took 15 years of my involvement with other great people,\u201d he says.\u00a0\u201cThat\u2019s this one, too. It\u2019s taking some time. \u200aBut you know that one of my favorite quotes is, \u2018Why swim halfway across the English Channel and turn back?’\u201d\u00a0<\/p>\n

\n\tHe\u2019s honed a pitch to potential big-dollar donors: \u201cOf all the things you\u2019ve accomplished, of all the large bank accounts you currently hold \u2014 wouldn\u2019t curing a rare disease be something you\u2019d like on your r\u00e9sum\u00e9?\u201d<\/p>\n

\n\tTheir charity operates on a \u201cventure philanthropy\u201d model: When research it funds leads to commercial treatments, EBRP receives a percentage of profits that it invests back into more studies. Angel donors cover all administrative costs, so 100 percent of donations go directly to research. \u201cWe run the foundation like a business,\u201d says CEO Michael Hund. \u201cThat\u2019s created sustainable philanthropy.\u201d\u201d<\/p>\n

\n\tThe most recent success came in April 2025, with FDA approval of Zevaskyn, a cell-based gene therapy for the most severe form of the disease, built on Stanford research that EBRP helped fund. Dr. Jean Tang, a Stanford dermatologist who appears in the documentary, was among the researchers whose work led to the breakthrough, and Eddie was touched to learn she listened to Pearl Jam<\/a> throughout medical school. \u201cThis actually makes you feel like you\u2019ve made a contribution,\u201d he says.<\/p>\n

\n\tVedder\u2019s performances in the film have a unique intensity, with the lyrics of\u00a0 \u201cJust Breathe\u201d and \u201cWishlist\u201d taking on particular added power. \u201cYou start finding new meanings in songs,\u201d says Eddie, who had to struggle not to get too emotional onstage. \u201cIt\u2019s always funny, because if you watch a film and there\u2019s a dramatic part where the singer sings the song and cries at the same time, it makes for the most emotional delivery. In real life, there\u2019s a reason they call it getting choked up. If you start to tear up, it is an impossibility to sing properly and hit the note.\u201d<\/p>\n

\n\t\u00a0\u201cI know how much thought and effort he puts into setlists before every show,\u201d adds Jill. \u201cI stay away. It\u2019s a thing! In the moment, watching the show, it was like, I\u2019m just watching another show, these are the songs. But when I watched the film, I was like, \u2018Holy shit.\u2019 Those songs just became completely about [the kids]. It was so heavy.\u201d<\/p>\n

\n\tOne of the older patients we get to know in the film, Deanna, dies of EB complications shortly after the concerts. \u201cIt\u2019s not for the faint of heart, being part of the community,\u201d Eddie says. The Vedders have attended multiple funerals of young children with EB. \u201cIt can be psychically taxing, but with every loss, we\u2019ve just been encouraged to work even harder.\u201d<\/p>\n

\n\t\u201cThese families deserve someone in their corner,\u201d says Jill. \u201cThey fight every fricking day, so we can fight with them. Ed and I are fighters.\u201d<\/p>\n

\n\tHund spent a decade working with Paul Newman and Joanne Woodward\u2019s oft-lauded charitable efforts before joining EBRP, and likens that couple\u2019s devotion to the Vedders. \u201cThe perception of a lot of celebrity-led organizations is that the founders show up with the check presentation, or they show up at the gala, or they show up at the red carpet,\u201d he says. Not the Vedders, he adds: \u201cThey\u2019re on the board meetings, they\u2019re in the clinics, they\u2019ve met hundreds of families, they\u2019re part of the strategy, they\u2019re talking to the scientists \u2014 from the front lines of families who are suffering, to the funerals, to the labs, to the treatment centers.\u201d<\/p>\n

\n\t\u201cI talk to Jill almost every single day,\u201d Hund adds.<\/p>\n

\n\t\u201cMultiple times a day,\u201d Jill interjects. \u201cLet\u2019s be real.\u201d<\/p>\n

\n\tMost viewers will come away from the documentary wanting to help, and the primary way to do so, the Vedders say, is to donate<\/a>. But also, Hund says, \u201c\u200ajoin the team. Not everybody can donate. If you can donate, great. If you can donate a lot, great. If you can donate a little, great. But you can tell 20 people, if you can organize something in your kids\u2019 school \u2014\u00a0 we have everything from polar plunges, which Jill does in Seattle, to bowling to baseball games. Whatever you can do. Every little bit helps. I think the biggest ask is, join the team and figure out where you fit in.\u201d<\/p>\n

\n\tIn a moment when even government officials are promoting skepticism of medical research, Matter of Time is a welcome reminder of the power of science. \u201cI think Kurt Vonnegut said something like, \u2018Science is magic that works,’\u201d Eddie says.\u00a0\u00a0<\/p>\n

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\n\tEven in the face of all the pain he\u2019s witnessed, Eddie still believes music is magic, too\u00a0 \u2014\u00a0the film shows kids with EB finding moments of hope and escape at his concerts. \u201c\u200aI don\u2019t dismiss that as trivial in any way,\u201d he says. \u201cHow fortunate to have found a delivery system for emotion and the understanding of one another,\u00a0the ability to hear a piece of music and not feel as alone as you did beforehand.\u201d<\/p>\n

\n\tEven so, he admits with a laugh, \u201cright now, in regards to EB, yes \u2014 I would say that the more valiant occupation is genetic research.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"Celebrity charity efforts, however well-intentioned, don\u2019t usually get anywhere close to solving problems for real. But Eddie and…\n","protected":false},"author":2,"featured_media":466555,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[27],"tags":[49,48,58927,75,190379,337,37891],"class_list":{"0":"post-466554","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-movies","8":"tag-ca","9":"tag-canada","10":"tag-eddie-vedder","11":"tag-entertainment","12":"tag-jill-vedder","13":"tag-movies","14":"tag-pearl-jam"},"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts\/466554","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/comments?post=466554"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts\/466554\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/media\/466555"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/media?parent=466554"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/categories?post=466554"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/tags?post=466554"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}